Listening to the voices of children: understanding the human rights priorities of children with disability in Vanuatu and Papua New Guinea

Community Engagement in Support of Moving Toward Universal Health Coverage

“…Part of a larger research study in Vanuatu and Papua New Guinea, "Voices of Pacific Children with Disability," was a consultative and collaborative project introduced to respond to the neglected needs of children with disabilities. 33 The project elicited the voices of children with disabilities, enabling them to engage with the process of identifying the complex intersectionality of lack of power as a child, discrimination faced both in their homes and schools, and the lack of resources that would enhance their capability to function despite the disability. The responses from the children were used to inform the development of health and welfare policy and services for a group that is often neglected in health service provision.…”

The Principles and Ethics of Including Children with Disability in Child Research

“…The response by Australian‐based researchers on the ‘Vanuatu and PNG project’ to these challenges was to design a project drawing on child participatory and disability inclusive research principles along with decolonising approaches — specifically those articulated as relevant to Pacific contexts. A key element of the research design included a focus on development of methods of self‐report for children with diverse disabilities (which is discussed elsewhere in Jenkin and others, , ). As part of the participatory and decolonising approach — specifically, to address issues of power and potential imposition of Western ideologies by Australian‐based researchers — DPO members and staff of the child rights agency had roles in all phases of the research.…”

“…As noted by Cronin and others (), narrative reviews are valuable in developing theoretical or conceptual frameworks and, consistent with this focus, Australian‐based researchers qualitatively analysed the literature to identify themes related to decolonising research design, child and disability inclusive data collection methods, and principles and ethics of research within such approaches. Commentary on the research design and methods that were developed for the project has been published elsewhere (Jenkin and others, , ). In relation to the identification and capture of principles and ethics, it was felt that agreement on a framework capturing these was essential to the project given the roles of local researchers.…”

“…Such approaches have also been used in child disability research in developing countries to enable local investigators to provide cultural input, and as a means of contributing to inclusive policies and practice (Ngo and others, ; Nguyen and others, ). Part of the training was a mutual exchange of knowledge whereby DPO members and local researchers, including those with disability, could collaborate with Australian‐based researchers on the finalising of research methods (Jenkin and others, ), and the summaries and action statements related to research principles and ethics to guide work in the field. During the workshop, each description of principles and ethics was actively interrogated and contextualised by DPO members and local researchers.…”

“…In total, 89 children with diverse disabilities, aged between 5–18 years living in rural and urban Vanuatu and PNG, communicated their needs and aspirations. For further information on the project, including its aims and findings, see Jenkin and others, , .…”